His decision, not mine (thoughts on an autism cure)

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by I learned.

If the child study team that gave us the diagnosis had asked that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”)

But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make. At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 19 and preparing to graduate high school, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for our autistic kids, even if the path is a bit longer or rockier.

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IMO the moment you help your child in any form. Speech, OT, IEP’s etc you’ve bought into “cure”. I find it hypocritcal when parents claim their now ‘high functioning’, independant children are not cured.

See, I have one of those, he’s gone from non-verbal mild PDD at 2.5 to mild NLD at 10. With help from OT for his fine motor and severe claustrophobia, with accommodations during English for his short term recall issues – Eng is a steady C (awesome!!) and everything else is b’s and a’s… and they are all his grades, no modifications. Social and behavioural is being taught under Ont’s PPM 140. He’s as “normal” as the rest of the Gr 5’s in his class.

Yes, he has “extenuating circumstances” but in our house, he’ll never be able to use it as an excuse. There is no reason for him not to be fully independant. ie. cured.

Then there’s the side of the spectrum that’s ignored, my 8yr old. Again, doing well, but still far behind in speech, language and language comprehension. A lovely, happy child… that loves to go out with the “children”… yet, with non-existant social skills. A child that unfortunately is going to be put into special ed next year, a slow learners classroom – not a PDD one since he’s too far ahead, and low behavioural, and I didn’t want him in on – 10 verbal children, aides and a teacher. He, I’d offer a cure…. tomorrow. In the meantime, we’ll continue to work for independance b/c NOBODY deserves to spend their days in the care of strangers.

It’s an extremely difficult question. I have triplets, all diagnosed, all over the spectrum, now almost 15. They are wonderful, incredible, inspiring people (as well as being a pain in the butt, because they are 14), and I can’t imagine them any other way. I also lean heavily towards the ND friendly end of the ideology debate.

I think that this is coming…for years now we’ve talked to different doctors and researchers, and there’s isn’t a lot of doubt that at some point in the next 20 years we’re going to have to make a decision. Maybe not a ‘cure’, but a decision about something that will make a real difference to them.

My son is not going to be able to make that decision for himself, and likely one of my daughters won’t be able to either. My son eats himself (literally- at one point we had to duct-tape leather mitts on to him so that his hands would have a chance to heal before he took more chunks out), and also attacks other people, sometimes seriously enough that they require hospitalization. One of my daughters is doing extremely well, and still cries herself to sleep on occasion because she’s in special ed.

If we were offered the ‘magic pill’, I don’t think that I would have a choice but to take it on my kids’ behalf. It’s not going to be up to them, it’s going to be my choice, balanced by whatever input they can give me at the time. And that hurts a lot, as they are wonderful people, and I truly don’t believe that they are ‘less’ because of their autism. I wouldn’t even know who they were after the autism was ‘gone’, and I can’t imagine a man the size of my son who is all of a sudden ‘NT’.

It’s a very difficult question that isn’t answered easily. I have no idea what we’ll do. At this point, I celebrate my kids for who they are (and they are all amazing), and we work to give them the best tools that we can so that they can live their lives happily and productively.